Search Results
Research at NHGRI
The NHGRI Office of the Clinical Director supports world-class clinical research and enhances the education of genetics investigators at all levels.
… The Office of the Clinical Director (OCD) provides oversight and guidance to … the leadership of the National Institutes of Health (NIH) Clinical Center, and helping to integrate the goals of NHGRI's clinical staff with those of the NIH Clinical Center. Supporting NHGRI's training programs in …
Event
On March 12-16, 2024, the National Human Genome Research Institute (NHGRI) will participate in the 2024 ACMG Annual Clinical Genetics Meeting - an annual medical and scientific conference continues to provide groundbreaking research and the latest advances in medical genetics, genomics and personalized medicine.
… Amyloidosis in the All of Us Research Program Clinical Genetics and Therapeutics Session A March 14, 2024, … a Functional Assessment from 3-year Nitisinone treatment Trial in Patients with Alkaptonuria Biochemical/Metabolic and … of Us Cohort P058 Design of the Prospective Study of the Clinical, Laboratory, and Dietary Determinates of Outcomes in …
Fact Sheet
Currently, there are different gene therapy approaches available through clinical trials.
… email your comments or questions to DemocratizingEd@mail.nih.gov . These educational materials are for informational … materials to talk with your healthcare provider or a clinical trial team. … Blood stem cells and blood cell development … …
Research Funding
ClinGen will advance genomics in clinical care and improve our understanding of phenotypic and functional effects of genetic variants and their clinical value.
… information on only a few genomic variants is used in clinical practice. One factor that limits the clinical use of variant information is the lack of openly … the classification of variants. … ClinVar and ClinGen, two NIH-based efforts, have formed a critical partnership  to …
Secondary Genomics Finding Service
Clinical Research Staff and Protocol Coordinators
… talk with someone in your group who is familiar with the participant and can give us some basic information, like the … participant a counseling letter, file the result in the NIH medical record, and complete a genetics consult. … The … that variants in 59 genes be returned to people undergoing clinical sequencing - this is frequently referred to as the …
News Release
American Indians and Alaska Natives IRB training programs at NIH ensure the welfare of people participating in federally regulated research.
… and Alaska Natives at the National Institutes of Health (NIH). IRBs are committees, at NIH and at other research … Hull has a dual appointment as a faculty member of the NIH Clinical Center's Department of Bioethics and director of the … and returning results of genomics studies to clinical trial participants. Over the course of the 3.5-month program, …
News Release
NIH issues a notice seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing Policy.
… Liaison Branch … Today, the National Institutes of Health (NIH) issued a notice in its Guide to Grants and Contracts … the data management of genomic summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to … GDS policy's data management practices would help support NIH's goals to promote scientific advances and protect …
News Release
Clinical geneticist to lead NHGRI’s clinical genomics research efforts
… Sarah A. Bates, M.S. … Clinical geneticist to lead NHGRI’s clinical genomics … pursuits. I am incredibly passionate about NHGRI and NIH, especially the support and development of early career … Dr. Gahl’s signature achievements was the founding of the NIH Undiagnosed Diseases Program , which aims to provide …
The Informed Consent Resource
Explore the basic elements of informed consent that are required by the Common Rule and that are relevant to genomics.
… such as collecting blood or other tissue samples. In clinical trials guided by genetic information, additional … over time. The treatment you receive as part of the trial based on your genomic information may improve your … As of October 2017, CoCs are automatically issued for all NIH-funded research continuing or beginning on or after …
The Informed Consent Resource
Explore genomics-relevant considerations for informed consent and guidance on how to approach them.
… and increase the scientific value of the data. For NIH-funded research, investigators are expected to obtain … to seek consent for more narrowly defined research uses of participant samples and data. In addition, a biobank or data … whether, and with whom, their post-mortem results of clinical relevance should be shared, and any authorization to …